Childhood Neurological Conditions Survey Part 2
08 December 2021
The British Paediatric Neurology Association and James Lind Alliance have launched a survey to define the Top 10 unanswered questions about the treatment of childhood neurological conditions, where there is uncertainty about the effectiveness of treatments.
We contacted you last year to support us in our first Priority Setting Partnership survey. More can be found on our web page here.
We have refined those questions and are now launching our second survey. From a list of 44 questions, please choose the top 10 most important to you.
We would like to invite you to help us ensure that the survey and workshops we carry out following the outcomes involve those whose lives are affected by these conditions and the clinicians who treat them. Your previous support was invaluable.
This partnership with the community is important - we know that this process is effective in finding research priorities. Recent priority areas have received millions of pounds of additional research funding.
For more information about the Priority Setting Partnership please visit our website which sets out our objectives and who is involved in our Steering Group. Weblink here.
Following the end of this survey, a priority-setting workshop is convened where participants, representing patients, carers and clinicians, discuss and finally arrive at a Top 10 list of research priorities.
The eventual aim is to turn these priorities into funded research questions that have the potential to go on to improve the lives of children with Neurofibromatosis and other neurological conditions.
If you are interested in taking part in this survey click the button below:
Website:
https://bpna.org.uk/?page=childhood-neurology-priority-setting-project
Contact:
info@bpna.org.uk
Survey closes:
31 January 2022
Nerve Tumours UK is not responsible for any data collection or content of the research.
Filter News

Jane Frances
Here Jane Frances tells us how findings from psychological research can help parents and teachers of children with NF
Read More
Sarah’s Story
Sarah has NF1 and works full time for the NHS check out her intriguing story here
Read More
Laura’s Story
Read about Laura's experience of undergoing surgery to remove a tumour from her spine here:
Read More
Visible Difference Equality Law Research: summary of findings
Find out more about the results here:
Read More
The Galloway Family and their “amazing” four year old Ruby
Have a read about the incredibly brave young Ruby Galloway (NF1) and check out their previous and future fundraiers.
Read More
“Framing the face: History, Emotion, Transplantation” a blog from James Partridge
Find out more about the blog and what is concerns here:
Read More
A Spooktacular Halloween day for NTUK
Find out more about the wonderful fundraising event here:
Read More
Nicks Triathlon in Support of his daughter Eilidh
Find out more about Nick's Triathlon and his daughter's experiences with NF1 here:
Read More
Tom GK- Hearing Loss: The Musical
Find out more about the musical and how you can secure your ticket here
Read More